Diagnosed And Living With PCOS
Updated: Sep 17
Have you ever known something was wrong with your body but weren’t sure what it was? This is, unfortunately, the reality for 1 in every 20 people. Misdiagnosis or the inability to figure out what is going on within our bodies happens more often than we would like to believe. I have personally experienced this multiple times, but in my most serious case, it happened to be positively diagnosed as Polycystic Ovary Syndrome.
So the biggest question is, what exactly is Polycystic Ovary Syndrome (PCOS)? Simply put, it's a hormonal condition. According to the Office Of Women’s Health, PCOS affects 5 to 10 percent of women between the ages of 15 - 44. With this illness, the ovaries produce an excessive amount of androgens, lowered levels of progesterone, and insulin resistance. Women diagnosed with PCOS typically have enlarged ovaries lined with numerous small cysts, which is how the disease gets its name.
Because it is not a common illness that many have, PCOS is often misunderstood. Let's dive into some of the symptoms, as well as my story of misdiagnosis and living with the "invisible illness."
Some symptoms of PCOS include:
Irregular Menstrual Cycle: This can include heavier periods, missed periods, periods more than once a month, or a period that doesn’t follow a "normal" cycle.
Appearance of Skin: This is most commonly associated with darkening of skin along neck creases, but can also present itself in the groin, or underneath breasts. Some people also experience skin tags in their armpits or neck. Many people also have hormonal acne on their face, chest, and upper back.
Excess Body Hair: One of the most prominent symptoms is excess hair in areas more commonly found in men, such as the face or chin.
Hair Loss: On the other hand, many women with PCOS experience thinning of hair or hair loss on their scalp.
Weight Fluctuation: The hormonal imbalance makes it difficult for people with PCOS to lose weight and often causes weight gain if the hormones aren’t controlled properly.
Mental Health: In a study conducted by Columbia University, it was found that there is a link between PCOS and mental health issues such as depression, anxiety, and eating disorders. Another common behavioral symptom is mood change.
Pelvic Pain: Though a less common symptom, PCOS causes cysts in the ovaries, and with cysts at times comes pain in the pelvic area.
Fertility Issues: PCOS is the number one cause of infertility. The hormonal imbalance interferes with the growth and release of eggs from the ovaries, also known as ovulation. If you don't ovulate, you can't get pregnant.
All hope isn’t lost. There are plenty of ways to manage this disease. To avoid facing painful or constant symptoms, you must stay on top of treatments. This can include taking multiple prescriptions up to three times a day and/or regularly scheduled doctor appointments. Beyond that, there are tons of natural remedies, diets, and workouts that are created specifically for people with PCOS. This battle is the reality of many women.
So now you know the symptoms, but the diagnosis doesn’t come easy.
Hi, I’m Shabby and I have PCOS. For me, my diagnosis was a 15-year long battle. I first knew something was wrong when I was feeling sharp pains at the age of 11. My parents feared I had appendicitis and rushed me to the emergency room. By the time we arrived and were seen by a doctor, the pain had passed and the doctors weren’t sure what happened, but just assumed it was a cyst. When I was 17-years-old, my best friend read an article in
Cosmopolitan about Polycystic Ovary Syndrome, so she shared it with me and that's when the research started. I was shocked to find I had almost every single symptom without even realizing it. I was regularly getting physicals and my doctor had never mentioned anything related to PCOS. I took matters into my own hands and decided to visit an endocrinologist. I figured a specialist could truly diagnose me to get me on the right path of figuring out what was going on with my body and solutions to get it under control. (Boy was I wrong.)
Let me just say, research matters. I was so desperate for a diagnosis I went to the first doctor I found. I was sure at this point that it was PCOS, but for the sake of science, I had the doctor run a blood panel. A week later, the results were in and he diagnosed me with Cushing’s Disease. I was shocked and terrified, eager to know the next steps. The doctor suggested a CAT Scan to confirm, only to find out everything looked fine. Thousands of dollars later the doctor gave me his new diagnosis: “You’re just fat." At 17-years-old, those are not words you want to hear anyone say, especially when you know something beyond the diagnosis is wrong. We parted ways with the doctor - don’t worry he no longer has a practice - and I went back to my ways of diet fads and working out.
When I turned 18, I had the same sharp pain I had at 11, except this time it was different. The pain was excruciating. It was the worst I had ever felt, and I had broken at least four bones at this point in my life. I left work early attempting to drive home screaming and crying the entire way. As I pulled up, my dad had to carry me out of my car and quickly place me in my mom’s car as we once again rushed to the emergency room. The doctors gave me morphine, ran an ultrasound, and let me know the culprit was a cyst. That was the first time a doctor suggested I could have PCOS. We decided to go for a second opinion, then a third, and a fourth, the results were unanimous. I was finally diagnosed with PCOS and put on birth control, Spironolactone, and Metformin, three common prescriptions to help manage PCOS. It gets difficult at times to keep up with all my prescriptions, and I will admit I have gone through phases of not taking them, but when I am on my medications my periods are more regular and overall I feel much better.
Keep in mind, there are different hormonal diseases that might have the same symptoms. If you think you may have PCOS or a similar illness, be sure to contact your health care physician or specialist to run a test. They can have blood work done or do an ultrasound to find your diagnosis. Remember, regular check-ups are important even if you don’t feel or notice any symptoms at first.
Comment below if you or anyone you know has struggled with PCOS and share your journey!